FEASIBILITY AND EFFECTS OF A PHYSICAL EXERCISE PROGRAMME IN ADULTS WITH MYOTONIC DYSTROPHY TYPE 1: A RANDOMIZED CONTROLLED PILOT STUDY

Objective: To investigate the feasibility and effects of a physical exercise programme on functioning and health-related quality of life in adults with myotonic dystrophy type 1. Design: A randomized controlled trial. Subjects: Thirty-five adults with myotonic dystrophy type I. Methods: After stratification for level of functioning, study participants were assigned by lot to either a training group or a control group. Training-group participants attended a 60-minute comprehensive group-training programme, Friskis&Svettis (R) Open Doors, twice a week for 14 weeks. The six-minute walk test was the primary outcome measure and the timed-stands test, the timed up-and-go test, the Epworth sleepiness scale and the Short Form-36 health survey were secondary outcome measures. Results: Intention-to-treat analyses revealed no significant differences in any outcome measures, except for an increased between-group difference after intervention in the Short Form-36 mental health subscale and a decrease in the vitality subscale for the control group. The programme was well tolerated and many training-group participants perceived subjective changes for the better. No negative effects were reported. Conclusion: The Friskis&Svettis (R) Open Doors programme was feasible for adults with myotonic dystrophy type I who had been screened for cardiac involvement, had distal or mild-to-moderate proximal muscle impairment, and no severe cognitive impairments. No beneficial or detrimental effects were evident.